Traveling Expectantly

Photo by Brian Doyle

It is always an expectant trip. We leave around 10:00 a.m. for the 58-mile drive to have lunch with my daughter, Madison.

Although I finally learned to drive from my wheelchair a little over a year ago, Pat, our family caregiver for seventeen years, is my “chauffeur” for our weekly visits. (In 1997 when Madison was four years old, I was paralyzed by Transverse Myeltis, an extremely rare inflammation of the spinal cord that began as the flu.)

Each Tuesday is the same—yet different. We leave at the same time, eat at the same place, and even order the same food. Yet, we never know which Madison will greet us. Will it be the “Happy Madison,” with the bright smile and dancing eyes who works hard to stifle her giggles? “Hey, Mommy!” this Madison will boom with her robust Barney-the-Dinosaur voice. Although nineteen, Madison has deep purple dinosaur roots and still accents her limited speech with octave-ranging pitches from Barney's baritone to Baby Bop's soprano. At other times, however, those same voices can set off an angry tirade or behavioral episode.

The “Happy Madison” will skip out to the parking lot to see me, kiss me on the cheek, and give me her famous light touch hug as she draws her head to mine and stares eyeball to eyeball as if she’s making sure that I’m “in there.” Once buckled in the van, this Madison may break into song—a Mary-Kate and Ashley Olsen favorite like, “Brother For Sale.” She seems to enjoy not so much the lyrics, but rather the video’s frame-by-frame images she so readily runs and repeats in her mind. And if this “Happy Madison” is particularly joyful, she may rock the van with her exuberant singing, swaying side to side like the folks in that classic cola commercial about teaching the world to sing. Each week, I hope this is the Madison I will see.

Sometimes, however, her autism rules and robs her of the words that the rest of us rely on to convey our thoughts and feelings. Her self-expression is reduced to behaviors that require interpretation and sometimes intervention, testing our best efforts to respond and comfort. So with our emotional shock absorbers in place, we look forward to seeing my Madison, and sharing a meal that promises to be a special memory—no matter which Madison greets us. Like most whose lives and journeys have been touched by autism, we hope for the best, but prepare for the worst. And always travel expectantly.

To prevent automated spam submissions through the Autism After 16 website, please enter the Captcha form below. We apologize for the inconvenience, but reduced spam helps us respond to your inquiries faster.

These days autism appears to be the disorder du jour and headlines about the newest autism breakthroughs are everywhere. Sometimes filled with jargon or unfamiliar references,...

We have previewed and commented on the "How-To" videos below. Some of these are simple; others are fairly complex. Refer to these yourself, or use them with your adult child or student to help teach and generalize skills. Please note that some videos may contain skills which require support or training. You must determine which are appropriate for you, your adult child, or your student to use safely. Also note that as these videos come from other websites, they may contain pop-up ads. Click on an icon to see category index. Click here for full index.